Hospice, and the three things families are wrong about

What electing hospice actually gives up

The waiver is narrower than the fear. For the duration of an election, Medicare payment is waived for hospice care from a hospice other than the one chosen, and for services related to treating the terminal condition or a related condition, or that are equivalent to hospice care. Care from the designated hospice, from another hospice it arranges, and from the patient's own attending physician is expressly outside the waiver.

Care for something unrelated is not waived — though the rule is candid that this is meant to be rare. The election statement must tell the patient that services unrelated to the terminal illness and related conditions are exceptional and unusual, and that the hospice should be providing virtually all care needed.

The attending physician exception is the one families use. A parent can keep the doctor she has had for twenty years, provided that doctor is not employed by or paid by the hospice for those services, and the election statement records that the choice was hers.

Where the hospice decides something is unrelated and so not covered, the patient or representative may demand a written list. The addendum has a required title — Patient Notification of Hospice Non-Covered Items, Services, and Drugs — and must give a written clinical explanation, in language the family can understand, of why each item is considered unrelated. Requested in the first five days it must arrive within five days; requested later, within three.

Signing the addendum is acknowledgement of receipt and not agreement. The addendum must itself say that immediate advocacy is available through the Beneficiary and Family Centered Care Quality Improvement Organization if you disagree.

It is not a one-way door

An individual or representative may revoke the election of hospice care at any time during an election period. The mechanism is a signed statement filed with the hospice, and the only constraint on the effective date is that it cannot be backdated. No reason has to be given, and nothing conditions the revocation on the hospice agreeing with it.

• On revocation, Medicare cover for hospice care stops and the benefits that were waived resume.
• The patient may elect hospice again at any time, for any election period still available to them.
• The hospice must file a notice of termination or revocation with its Medicare contractor within five calendar days of the effective date.

This is the answer to a frequent reason for refusing hospice. A patient who wants to try a treatment, or whose condition improves, leaves — and can come back.

What the benefit actually covers

Families picture nursing and morphine. The covered list is wider, and three entries on it are exactly what an exhausted caregiver is looking for and does not expect to find here.

The rights are handed over before care starts, spoken and written, in a language and manner the patient understands, and signed for. Two of them are worth raising at that first meeting: the right to be told the scope of what the hospice will provide and the specific limitations on it, and the right to effective pain management and symptom control.

The rights also protect the act of complaining, which is what a frightened family needs. The patient has the right to voice grievances about care and to not be subjected to discrimination or reprisal for exercising their rights. Allegations of mistreatment, neglect or abuse must be reported immediately to the administrator, investigated immediately with action taken to prevent further violations while the allegation is checked, and verified violations reported to the state survey agency within five working days.

Respite: the provision caregivers need and are least often told about

Inpatient care must be available for pain control, symptom management and respite purposes, in a participating Medicare or Medicaid facility. Respite means the patient goes in for a short stay so that the family caring for them at home can stop for a few days. It is a condition of participation, not a favor, and asking for it by name is the fastest route to it.

• It can be provided by the hospice's own inpatient unit, by a certified hospital or skilled nursing facility meeting the staffing and patient-area standards, or by a Medicare or Medicaid-certified nursing facility meeting the patient-area standard — which is what makes it available in places with no hospice house.
• The facility must provide 24-hour nursing services, and each patient must receive all nursing services as prescribed and be kept comfortable, clean, well-groomed and protected from accident, injury and infection.
• Where another facility is used, the hospice supplies the plan of care, the facility agrees to abide by the hospice's palliative care protocols, and the hospice keeps responsibility for making sure the staff caring for the patient have been trained.

There is a structural reason a hospice will talk about respite as a short stay rather than an open-ended one: across its whole Medicare caseload in a twelve-month period, inpatient days may not exceed twenty per cent of total hospice days. That is a limit on the agency, not on any one family, but it explains the shape of the answer you get.

How palliative care differs from hospice

Palliative care is symptom and comfort care delivered alongside treatment. Hospice is a defined Medicare benefit with an election, a waiver and a set of covered services. Every hospice is palliative; not all palliative care is hospice, and the second does not require anybody to give anything up or to say anything about prognosis.

Sahvelo does not publish a federal definition of palliative care as a separate benefit, because there is not one to quote in the way the hospice regulations can be quoted. What is said here about hospice is sourced; what is said about palliative care is the ordinary clinical distinction, and is marked as such.